In April this year, I took part in a Narrative Medicine workshop at Columbia University, as part of my British Academy fellowship project on diasporic dying. In preparation for the workshop, we were asked to watch the Japanese film ‘Departures’ by Yōjirō Takita (open the link and listening to the soundtrack while you read this). The film is a beautifully rendered story about the ritual ceremony of ‘encoffining’ (nōkan), where a body is prepared and dressed by professionals before the funeral. The protagonist in Departures is Daigo Kobayashi, a young musician who moves from Tokyo to his rural hometown with his wife Mika, and becomes an assistant to an encoffiner.

Early on in the film, Daigo takes the lead in preparing the body of a beautiful young woman - who is rumoured to have committed suicide - under the watchful eyes of his mentor and the woman’s family. As Daigo begins the ritual washing of the body there is a moment of surprise and confusion when he discovers that the young woman has ‘a thing’ and is transgender. The mother and father are consulted about how they would like their child’s face to be made up - as a man or a woman? In struggling with their own chaotic feelings and respect for their child’s life, the parents ask that she is made up as woman. With much care, Daigo applies her make-up for the last time. The camerawork throughout the whole scene has the comportment of a respectful mourner, moving slowly between the different faces of the living and the dead, involving the viewer in the on-goingness of the dead body, that even though lifeless remains a conduit for the working out of affects and the flow of identifications. Throughout the film we become witnesses, not only to Daigo’s transformation – how he finds himself through the honing of his skills in this art - but also to the lives and unfolding predicaments of the dead.

The film made me think more deeply about the queering of the body at times of illness and death and what has been called ‘sly civility’ by the cultural theorist Homi Bhabha. Bhabha’s ideas about mimicry and sly civility were developed through his analysis of colonial texts, where he saw possibilities for the subversion of authority and the deferral of meaning. Such subverting of meaning and cultural hierarchies was often subtle in Bhabha’s view, a trick of the eye that ‘produces a text rich in trompe-I’oeil, irony, mimicry and repetition’ (p.122). When it comes to illness and dying, I have found that acts of sly civility are more substantial; a part of a neglected archive of affects and bio-politics or what Jasbir Puar calls ‘bio-necro’ power in which matters of race, gender and sexuality can live on.

James, a refugee from Kenya, was dying from AIDS related cancers of the throat and lungs, when I interviewed him. James did not want anyone, including his estranged wife and three children, to know that he had AIDS. ‘I just thought that the moment I mention this kind of thing, the whole family is going to shatter’. In the London Hospice where he had been admitted for a two-week stay for symptom control, James was passing himself off as someone with terminal cancer.

There can be premeditated master plans behind faking an illness identity, but imposture in illness can be incremental, a day-to-day journeying and improvisation. Substituting one persona in favour of another requires courage and skill but is also disease and medicine dependent. Some diseases, like skin colour or facial features, offer more room and materials for masquerade than others. And some drugs, can be so effective in controlling symptoms that it is entirely possible to mask and to even ‘forget’ that you have a disease.

Image David Oliviere

In the world of illness taboos and imposture, one person’s cancer is another person’s AIDS. For Nusrat, a Pakistani Muslim, the decision to be open about her cancer was difficult. She knew from experience how quickly news and rumour could ricochet between London and Lahore; how in a matter of hours it could afflict generations of a family. Nusrat remembers those acquaintances that she now suspects were dying from cancer and who were hidden away behind closely guarded doors, excuses and half-truths. They were made to disappear so that cancer and its threat of infecting and blighting the health of the heteronormative family could not be verified. ‘People feel that if others come to know about their illness, they won’t be able to marry their children off, or people may think if the mother had cancer, then the children will also have it’.

Stigma, like cancer, can be sticky and tentacular. It can also have an after-life, threatening the lives and the futures of others, so that the need for imposture and sly civility can extend after a death. Louise, a hospice nurse,

“We had a young Indian boy die of AIDS on the ward. I remember that he had chosen to keep it from his parents and they had inadvertently found out from the ambulance crew, who had berated them for not telling them that he had AIDS. It was a terrible chain of events. But they were also really distressed when he died because they couldn't have the coffin open and they just really didn't know how they were going to explain that to all their extended family who didn't know that he'd died of AIDS. In the end they basically told everyone that he died of skin cancer, and used that as a reason why they wouldn't have the coffin open.”

These stories of loss and shame are part of a hidden archive of pain in hospices, hospitals, care homes, funeral parlours, cemeteries and households. Reflecting upon transgender, ‘gay grief’ and Jewish traditions, Noach Dzmura argues that,

"While all deaths and family mourning are unique, transgender bodies and gay grieving tell a more complicated story, a story that cannot be covered over by efforts to assimilate our lives in heterosexual, gender-normative communities. While normative expectations may paper over some differences during our lifetime, our death and our mourning sing of our differences. Let that song not be solely a lamentation, but a Kaddish exulting in the diversity of lives our God created."

The queering of disease, dying and grief encourages and forces new questions about the permeable boundaries between life and death and the demands of ‘queer evidence’ that José Esteban Muñoz regards as ‘ephemera’ - ‘the things that are left, hanging in the air like a rumor’ (p.65).

Note

1. James' story is told in the chapter 'Dissimulation' in my book 'Death and Migrant' (Bloomsbury Academic) out next month.

Case Stories

Case stories is a transdisciplinary project on migration, dying and care. Using oral histories, stories and art, the aim is to better understand the pain of social exclusion, inequality and injustice at the end of life. The site is developing with the project.